Living With

Dear Friends:

The first time I heard the word "dermatomyositis," I had to have it repeated and then spelled out for me.

Robin Chavez
Photo of Robin Chavez by Christian Steiner

I was scared and confused. I could barely comprehend what the doctor was saying to me. I was young, a newlywed, with a promising career as an opera singer, and had just been told I had a serious disease. I thought to myself, what is happening to me?

For months, I had experienced trouble walking, climbing stairs, even singing. Now I learned that I had a rare inflammatory muscle disease that affects fewer than 20,000 people in the United States.

Perhaps you’re reading this because you, or someone you love, also received a diagnosis of dermatomyositis (DM). As I did, you’re probably wondering what this will mean for your future, your family, your dreams. You may be feeling worried and confused — and even angry.

As you gain a clearer understanding of the causes, symptoms, complications and treatments for DM, you’ll learn that, although this inflammatory muscle disease can cause great distress initially, the symptoms can be alleviated with proper treatment. In fact, it’s possible to recover partially or completely from DM.

As soon as I received my diagnosis in 1996, I contacted the Muscular Dystrophy Association. My local MDA office was very helpful, providing information, answering all my questions and helping me get established at the MDA clinic, where a course of treatment was started.

It wasn’t easy, but slowly things got better, and I felt my strength returning. At the beginning of my treatment, I couldn’t manage to climb even a couple of stairs. But a few years later, I walked up 120 steps to my hotel room when I sang in Rome. In 2000, I sang for a national audience on the MDA Telethon, and I continue to perform nationally and internationally.

I also continue to visit my MDA clinic, where my treatment is monitored and adjusted as needed. Local MDA staff also direct me to resources or simply let me know I’m not alone in coping with this disease.

It can be painful coming to terms with what life has handed you and making the necessary adaptations. I know it was for me. But like me, I hope you find that your myositis isn’t a dead end in your life’s journey.

I still face challenges due to DM, but I’ve learned these challenges can be successfully managed. As a single mother of three wonderful children, I know support is there for me from my family and friends, my medical team, and even from laws such as the Americans with Disabilities Act. And happily, my singing career continues to thrive.

When I first received my DM diagnosis, it was important to me that I continue to pursue my dreams. DM hasn’t stopped me but has motivated me to fight even harder to do what I love. I pray this also is true for you. And remember: As you face this challenge, you’re not alone in your fight!

Sincerely,

Robin Chavez
Arlington, Texas

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